Volunteer opportunity presents learning experience for SECD students

Abby Simpson first learned about the Global Foundation for Peroxisomal Disorders (GFPD) from the parent of a child who had Peroxisome Biogenesis Disorder (PBD). Now Simpson has been an integral part of all five of the GFPD Family & Scientific Conferences.

Simpson, a lecturer and clinical supervisor in the University of Nebraska-Lincoln’s Department of Special Education and Communication Disorders, works alongside Catherine Ozio to coordinate volunteers to provide free childcare for the duration of the conference. Last month, Simpson was accompanied by four undergraduate speech-language pathology students from Nebraska, as well as two of her friends, for the conference.

That group of eight individuals, along with other GFPD family volunteers, provided 25 hours of childcare over three days of the family conference. The children, most of whom have a version of PBD, ranged in age from three months to 35 years old. The volunteers also cared for typically developing siblings during the conference. Simpson said there were between five and 20 children being cared for in the room at any given time.

“Children with PBD have varying degrees of dual-sensory loss, developmental delays and gross/fine motor deficits,” Simpson said. “Some of the children also have seizures, which we have to consider when planning for childcare. Many of these children also need physical support to move around the childcare room.”

The GFPD was founded in 2010 in an effort to bring together families impacted by peroxisome disorders, including Peroxisome Biogenesis Disorder-Zellweger Spectrum Disorder (PBD-ZSD) and the related single enzyme peroxisomal disorders. These disorders are rare, genetic, metabolic, terminal conditions affecting all major systems of the body. Children at the most severe end of the spectrum typically do not survive their first year and the majority of children with PBD do not live past the age of 10.

When it began, the GFPD was a parent support group of about 50 families. Today, the GFPD registry connects nearly 400 families from 30 countries. The foundation also has a scientific advisory board comprised of leading researchers and physicians in the field of peroxisomal disorders. The now biennial Family & Scientific Conferences bring together families and professionals from around the world.

Sophomore Brielyn Borer was one of the four Nebraska students who volunteered at this year’s conference. She said she knew nothing about GFPD heading into the conference, but was eager to volunteer in any way possible.

“I love learning how to help and understand kids of all ages and differences,” Borer said. “I hope to work closely with kids in the future as a speech-language pathologist, which is why I jumped on the opportunity to volunteer at the GFPD conference. I love learning and exploring new areas, and this conference accomplished just that.”

Junior Nicole Bakenhus said she jumped at the opportunity to volunteer because it would give her hands-on experience working with children who receive help from speech-language pathologists, while also hearing parents’ and caregivers’ perspectives on SLPs.

“When I was there, being hands-on with the children during the day and talking with the parents and families on the last night, I realized that GFPD is more than just a non-profit organization; it is a family,” Bakenhus said. “Although the reality of PBD is nothing anyone would hope for, the overwhelming optimism and positive aura that encompassed the entire conference was contagious and made leaving the conference so difficult.”

Junior Natalia Nolting said she also saw the value of attending the conference as it pertained to her future career as a speech-language pathologist. But she came away with much more than just a line added to her résumé.

“I knew that the interactions and instructions for caring for some of these children would help me be better equipped as a future speech-language pathologist,” Nolting said. “Returning home from the conference, I was filled with so much joy. I knew that a lot of these kids were handicapped, but when you looked at the child and saw them as a person and didn’t let the disability define them you saw their genuine smiles, big heart, contagious laughter, kind spirit, desire to know you and curious mind. It was such a blessing to be able to make an impact and be a friend to such little hands and little feet.”

Senior Anna Plettner-Nelson also left the conference with a greater appreciation for the children affected by PBD.

“I knew next to nothing about the GFPD before going to the conference,” Plettner-Nelson said. “Even my many Google searches didn’t really give me an understanding of what Peroxisomal Disorders really entailed. (Before the conference) when family asked me what the disorder meant, I responded with what these kids couldn’t do. I am so grateful for the opportunity to have been able to go to the conference because every day I was there I was amazed by everything these kids COULD do. I am extremely thankful for having been able to learn so much from these incredible families.”

For Simpson’s part, she admits the conference is exhausting for her volunteers, but an event that is well worth it.

“Families attending the conference for the first time may be hesitant to leave their children with us, especially given the needs that come with a PBD diagnosis, but we try to reach out to those families and invite them into the childcare room to see our team in action,” Simpson said. “We did have a few families tell us that this was their first time leaving their child with someone other than a grandparent. The trust they have in our volunteer team means a lot. That is the biggest compliment anyone could give us.”

Bakenhus, meanwhile, is already making plans to volunteer again in 2019 and hoping to champion GFPD on the local level in the meantime.

“Now I feel compelled to figure out a way to spread the word about GFPD and do what I can to help it grow, especially here at UNL,” Bakenhus said. “I already have my calendar marked for Pause for PBD on October 5 and can’t wait for the next GFPD conference in two years.”